Diagnosed on 12/1/21 and New Here
Hi, thank you for this board! I'm supposed to start Nigro protocol on 1/10/22 for T3N1M0 squamous cell carcinoma. I like and trust my team, but honestly, starting to feel overwhelmed and afraid, of the unknowns, I guess, of side effects and how to treat or lessen them, and care for myself. I'm hoping to read and pick up info here which might be helpful. I'm grateful for others sharing their experiences and practical tips.
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Hopefully you have read up on prior posts. That helped me a lot. Once your treatment starts, you will feel like you’re doing something to help your condition. For me, the side effects of radiation weren’t horrible although I do have vaginal stenosis. The chemo, however, removed my appetite completely and I developed mouth sores. I think I lost maybe 40% of my hair so it could have been worse. I think this discussion board is great because I have never met anyone else who had anal cancer. I had breast cancer 11 years before this cancer and I feel like SO many people have experienced that.
Feel free to post any questions or concerns
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hang in there Kateril! you have our support! ask specific questions as you go.
briefly, in my treatment for squamous cell stage 2-C anal cancer: side effects: Caring for children or working a job would have been impossible for me from the very first day to about two months after treatment. There is the diarrhea problem as noted above. Obviously, stay hydrated and do what you can to avoid constipation since bms are going to be very uncomfortable. Your ability to taste foods changes, and then that leads to odd reactions to your favorite foods, and your overall interest in eating. I lost 20 lbs over the course of the treatment. I had one IV chemo session on the first day of radiation. That made me tired and very spacy, plus very nauseous. Then oral chemo twice daily for the rest of the treatment period, again, nauseating. Radiation: discuss with your doctor ahead of time what is required: e.g. show up every time, 15 mins ahead of schedule, be prepared to wait, take someone else's place, or to change machines at the last minute, do not forget to match your chemo to each radiation appointment and to time your doses exactly, and when the techs get you into position and then say lie very still, do your best to comply for the entire session. Be aware that your doctor will be working behind the scenes to check to see if each radiation session was properly done, and that moving during treatment makes for a less effective treatment. But no one else monitored the oral chemo, that was up to me and my support team. Each radiation session itself was painless, but discuss pain with your doctors ahead of time so that you get the proper support. Expect , about a couple hours after treatment, a bizarre sense of internal heat, nausea and disorientation; then a whack of fatigue. The skin on the front and back of my abdomen started peeling around week 5 and then the peeling got much worse. I lost all public hair and my vagina shrank; at the end there was also pain in my vagina. Towards the end, I spent a lot of time using sitz baths, listening to audio books. I was too ill to follow a whole movie or read books or use the internet. I also got a wheelchair because walking was way too painful for a couple of weeks. And I felt the cold very keenly and bundled up even to go short distances in the summer sun. How to cope with side effects. I pushed myself to get out of bed and move around a bit every day, with very gentle stretches to compensate for all the lying down and sleeping. You should get prescriptions and advice for all these issues and be ready to take measures to minimize diarrhea, constipation, skin peeling, nausea and pain. Apparently you can get pain in the feet and mouth sores, but I lucked out there. In general, it was the nurses who were best about providing info about side effects. The side effects were quite pronounced in the 4 weeks after treatment ended, then they quickly dissipated. A personal note: I found it very helpful to take notes, to have my caregiver take notes, and to gather all the print-outs produced by doctors and nurses into a large binder with divided sections and so forth, so that when I even when I was on max pain meds, I could go over schedules and info about side effects regardless of how loopy the pain meds made me. I kept a daily journal of diet, beverages, meds, sleep, treatments and so forth in one section of the binder. It helped me to communicate effectively with my hospital team and to keep track of what I was doing for each side effect as occurrences took place. Taken together, the meds and over the counter stuff I was taking took up 3 single spaced pages. Its largely up to the patient and caregivers to figure out what to take for each side effect on each day. And the binder helped me to avoid some minor errors in taking meds. A quirky end note: I was an out patient in a research hospital; some details of my treatment plan were altered during the six and a half weeks of radiation because new protocols were being adopted (and my insurance covered the changes) at the time. The best advice I received: take everything one day at a time. If you are still freaking out, take things one hour at a time. It was too difficult to get my arms around the whole experience ahead of time. I avoided the internet searches on cancer, calling help-lines, and loose discussions about outcomes with caregivers and other patients. (!!!) My two cents: If someone in your world cannot get on board with this approach, consider what steps you might take to protect your sense of well-being during this trying time. And now? it is 18 months after diagnosis and treatment, and so far, so good ... no evidence of cancer is evident, regained lost weight, almost complete return to normal digestion, and I am making progress on vaginal restoration. I am currently in a 5 year surveillance regime, and, with all due caution, I would say that my chances of a cure are very good. Was it frightening, stigmatizing, and incredibly painful? Yes. But it appears that I am responding extremely well to the treatment.
Not be be too annoying, but I am going to post all this again in a separate thread in hopes others can find useful tidbits here.
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Thank you for seeing me, Zetapup! I saw your other post and responded there. I am 62 and retired, thank goodness. I am grateful for your detailed descriptions of things that I'm wondering about, but trying not to dwell on too intently- that would be counter-productive for me at this point, I think. For instance, I'll have to wait and see how difficult walking will get for me, and was a little astonished that you used a wheelchair... I can't imagine sitting on a chair of any kind with the burn going on! Cheers.
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Perhaps I should mention, I delayed the start of my treatment earlier this month when my father became ill. He did not recover, he passed away 26 January. We've delayed his funeral until April 30th, and now I must start treatment without further delay. I will ask questions as I go, in hopes of any tips and pointers for a quicker recovery.
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Thank you, Dodiefae, I will gratefully ask questions like what worked for mouth sores and such things as I go. My treatment start was delayed when my dad became ill and passed away on 26 January, and everything seems a little surreal, but now I have to begin.
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Good morning Kate,
Hang on for this wild ride my dear. You will get through this! The unknown can be a dark and scary place so May this be of great relief to you. I have only just joined and am 7 months out post chemo 5Fu and Mitomyacin with 30 rounds of intense radiation. The chemo induced mouth sores “for me” were pretty severe, left me drooling, unwilling to talk however viscous lidocaine swishes and dilaudid pain meds helped me to get through it. Please ask for anti-nausea meds before your infusions and during. Ativan for nausea worked well for me. The Radiation burns were pretty severe but again strong pain medications, aquaphor cream and silvadene cream helped. I did have to take. Break at my 5th week for a week due to severity then picked right back up. Please don’t fret! I promise you, you can do this. Now the chemo and radiation unfortunately have left me with severe vaginal stenosis (now much improved with A pelvic floor Physical therapist and Dilator use!, get a referral and see one right after treatments!) and Chronic neutropenia rendering me at high risk for inability to fight any infections ever. That means low wbc and low neutrophils the blood counts that fight infection. Radiation likely the culprit as those are produced in the bone marrow of the pelvis which is wiped out with radiation. I was blessed enough to be offered a drug called Opdivo (immunotherapy whos job is to recognize cancer should it ever resurface.) It is 6 infusions total, once a month. I follow up closely and often with a colorectal surgeon and get manual rectal exams and biopsies under anesthesia to closely monitor. Also follow up with bone density scans, eat clean, refrain from drinking or smoking, get adequate protein and calcium. High protein shakes a must for rebuilding the damaged tissues from radiation. Excellent building blocks for repair! Gather a nutritionist with your team, even better yet if you can add an Integrative oncologist that’s great too.
BTW I am 55 yrs old, otherwise healthy, Dx HPV T3b, N1, M0. I am back to exercising daily, hiking and back on my mountain bike slow and steady. My name is Pam, I never mind sharing my cell # should anyone ever want it. We need each other here for sure! XOXOXO
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hi kateril, remember that typically, this is a slow growing cancer, do not feel weird about postponing treatment to cope with your father's passing. having the emotional centring necessary to cope with the treatment is a big part of your essential toolkit. you have a challenge ahead of you, and you are handling this really well. you got this !
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Your soooooo welcome. It gives me great pleasure to connect like this. Support groups should be mandatory. I too am a nurse and there is so much emotional support and knowledge that could help others! A travesty not to share.
I am so sorry for dads transitioning. You have so much to contend with. I will light a candle for you all during my next meditation 🧘♀️
[Content removed by CSN Support Team.]I’m up as early as 5am, 8 for you, call text anytime! X0x0 Pam
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Hi Pam,
Please remember that these discussion boards are a public forum, which means it’s open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone, street address, etc. can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines. You might wish to send a private message to connect.
Best,
Ken
CSN Support Team
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Oh dear, I completely lost sight of this reality ~caught up in all the emotion. Thank you soooo much for this notice. I’m kinda embarrassed. I will look at private messaging next time and hope to exercise the same caution every time I am on the sight. Thank you Ken
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Sure, I edited your post to remove those details.
Best,
Ken
CSN Support Team
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